SciELO - Scientific Electronic Library Online

 
vol.42 número2Heterogeneidad en el cribado poblacional de la fragilidadTele-enfermería en pacientes crónicos: revisión sistemática índice de autoresíndice de materiabúsqueda de artículos
Home Pagelista alfabética de revistas  

Servicios Personalizados

Revista

Articulo

Indicadores

Links relacionados

  • En proceso de indezaciónCitado por Google
  • No hay articulos similaresSimilares en SciELO
  • En proceso de indezaciónSimilares en Google

Compartir


Anales del Sistema Sanitario de Navarra

versión impresa ISSN 1137-6627

Resumen

VICENTE, E et al. Spanish rare disease registries research network: first results of Spain-RDR’s project in Navarre. Anales Sis San Navarra [online]. 2019, vol.42, n.2, pp.179-186.  Epub 02-Mar-2020. ISSN 1137-6627.  http://dx.doi.org/10.23938/assn.0636.

Background

The Spanish Rare Disease Registries Research Network, Spain-RDR, was a project of the Carlos III Health Institute (2012-2015) in which all the Autonomous Communities participated. The initial results for Navarre are presented.

Methods

The Minimum Basic Data Set for 2010-2011 was explored to assess the collection of possible cases of rare diseases in Navarre (pilot study). The information was later extended in both time (the year 2012) and sources consulted (Mortality Statistics and Temporary Disability Registry).

Results

Navarre identified 9,420 possible cases amongst the 8,141 residents in the pilot study, reaching 13,494 cases amongst the 11,644 people obtained with the extension of time and sources. Thirty-eight percent of the cases corresponded to endocrine, metabolic and immune diseases, and congenital anomalies.

Conclusions

It is necessary to expand the sources and the period of data collection, as well as to validate the cases registered in order to know the real magnitude of the problem as a whole and for each specific disease included in the registry.

Palabras clave : Rare diseases; Registries; Information systems; Epidemiology.

        · resumen en Español     · texto en Español     · Español ( pdf )